Ahsan Basha, MD (Host): Hello, this is Dr. Ahsan Basha, Medical Oncology and welcome to our intermittent programs and podcast called the C Word, Community, not Cancer. Today's visit is actually going to be very special. It is really going to play into the whole concept of community. I actually have three guests with me today.

Libby is a patient of mine, who was diagnosed with breast cancer about a year and a half ago or so and Sheri, who's been a guest on our podcast before, has also been under the care of Dr. Hamdan for her breast cancer. And we have a person who's fairly new in the cancer story, Michelle, who's joining us today under the care of Dr. Rao.

So today's topic is really going to be about community, about how these people came together, what it means for them to be in this group together and sharing their experiences and guiding each other through it. So, I guess since I know Libby the best, I'll talk to you and ask you how did all this start?

Libby: Okay, so yes, I was diagnosed with my breast cancer back in November of 2023, and my friend Julie had been diagnosed, who was also a patient of yours, a few months before that. And I called everybody I knew that had had breast cancer and talked to them on the phone or texted them or met them for coffee.

It took hours and hours and hours out of my time, which I wanted to do because I wanted to know all this information, but I thought to myself, we need to get together in a group to talk so that I'm not having all these individual conversations and I knew people were being diagnosed, right along with me.

So I talked to my friend Julie, and uh, she helped me. We started this support group, back in December of 2023, pretty quickly. And, we've been just inviting people and we've put it out there. We have information cards at each oncology departments and we've been growing unfortunately since then.

Host: Unfortunately and fortunately. We're going to try to stay positive here. That's great that you and Julie got involved and did this, and very happy for you. Sheri, how did you get involved?

Sheri: Ahm actually a friend of mine that I go to church with referred and so I'm forever grateful to Libby and Julie because I felt like I needed something that was going to normalize what I was going through and also have a bunch of resources. So there's so many different things I didn't know about or what to buy or what could help with some ailments or pains you were having or something. So it was very, very useful and it's very positive. In fact, I was just telling them, my mother-in-law had asked me if I was going to stop going because she thought that we sat and just cried and felt sorry for ourselves. And so it was just going to bring me down, especially now that I am cancer-free, but it's actually a 180 from that. So it's very, very positive, very forward focused, very health conscious and take responsibility for what you can control since so much of it, you can't. So I, yeah, that's how I got involved was through a friend of mine who unfotunately did not make it, but she went several times.

Libby: She was, a part of our group for a long time.

Host: Michelle, how did you get involved in this? Because you're not actually part of, um, Riverside, you're, you're from the community.

Michelle: Yeah. I have known Libby for many, many years. But as soon as some family and friends had found out that I had cancer, they're all shooting me Libby's phone number. You've gotta call her. Gotta get in touch with her. They have a support group. I mean, I had, I must have had 15 to 20 people send me the support group information. So I reached out to Libby right away and I'm like, all right, sign me up. I want to come to the support group. And, I'm like, but I have so many questions because when you sit, I was so newly diagnosed and I had so many questions.

When you sit down with that diagnosis, you get so much information thrown at you at once. And I was just like, in information overload. So many questions that you know, you forget to ask your doctor at the time that you're there. And so it was so helpful. We met for coffee, because it was probably two or three weeks before the next meeting.

I think I had missed the one and it was going to be another three weeks. So we met for coffee and sat down and I have my list of, you know, when everything's first started and I'm like, here was my journey.

And she just answered every question that I had and Sheri's been a wealth, there's so many women there that have been a wealth of knowledge and so many different things.

You just don't realize that you even have a question about something until you hear that they've gone through it. I'm like, I didn't even think that was a thing, you know? And it's, that's the nice thing about it.

Host: And again, you were diagnosed in March, correct? What was your experience before you met them, tell me a little bit about what happened right before you met.

Michelle: It was quick, so I literally, felt the lump in December, and then by February, we're going through all the doctor's visits and everything like that, and I get told that I have the cancer. Literally, I think it was pretty soon after that that I reached out to you but I had a girlfriend too that worked at St. Mary's that was able to kind of get a lot of my stuff pulled, pushed through really fast.

So we were able to start treatment right away. So I started treatment in March 13th, the chemo treatment. My mass was so large that it had to be reduced. It was like 10 - 12 centimeters large. It was very large. That just came up overnight. It was the craziest thing. Yes, I have triple negative, stage 3+ just because of the size of it and it's in the lymph nodes in the armpits so I, have my last chemo treatment August 11th.

Host: Oh excellent. It's coming up.

Michelle: Yes. Yes.

Host: Very excited for you.

Michelle: So then after that I'll do the, I'm going to do the double mastectomy. Then I'm going to radiation.

Host: So tell me what a meeting is like with you guys. What happens?

Libby: Well, like Sheri said, there is some crying every once in a while, but mostly laughter, mostly Sheri. No, I'm just kidding.

Sheri: Yeah. Right.

Libby: Mostly we laugh a lot. We do. And we, all know and believe that being positive is a lot of the battle. And so we try to be positive and we try to encourage and not give our, or we give information that we know and we don't ever push anything. That's what we hope to do is not to push any of our opinions onto anyone, but just give out all the information so that everyone can make decisions because there's a lot of people going through, making a lot of decisions for their treatment and so we started, our first meeting was December of 2023. So in January of this year of 2025, we kind of slowed down a little bit. We had our group, we were meeting, we didn't have a lot of new people.

And so Julie had, really been looking into, some different programs. Well, she always did all through it, as you know. And I was right after her. I, was kind of following behind her and, but she found a program called Healing Strong and became a leader for it. And so now our meetings consist of, most of the meetings consist of a component of that.

So it deals with eating healthy supplements, things to avoid, forgiveness, just spirituality, meditation. Yeah, lots of different components in that program. So we go over some component each meeting and we still, even just this month, at the beginning of July, we had a new woman who had been diagnosed come.

So we kind of took a little break from that part of it and focused because she had lots of questions and we had lots to talk about. So, we kind of modify when we need to.

Host: Sheri, you mentioned forgiveness. What does that mean?

Sheri: Oh, it's stress really, isn't it about a chapter Libby where they talk about how you don't want to harbor ill will, or bad feelings, like you don't want to hold onto that because that can feed into the cancer and can be very negative. So you want to forgive yourself and you want to forgive others. You don't want to hang onto any bad feelings or try to have peace in your life as much as possible which is not easy.

Host: Is there a particular tool for forgiveness?

Sheri: For me personally, I would say I do a lot of praying, to be honest with you. Yeah, very much so. But I, personally have learned through this though, the importance of that because I probably would not have thought so much about it, to be honest with you in the past where now I do realize the damage it can do to you, to your soul and to your body when you hang on, so you're kind of, you're forgiving for own healing? Not as much as for them.

Host: That's exactly why I asked, because I mean, I've been dealing with cancer now for 20 something, 25, 28 years I think. But this is the first time I'm hearing about this actual concept of forgiveness.

Libby: Yeah, a lot of the information that we've been looking into is a lot about stress and I mean, forgiveness is definitely a component of that, of causing stress and letting go is a good way to put it because you can only control what you do. You can't control other people. And that's, I think a lot of stress.

Host: There's a program that I've, I've been doing and it's much about the past is the past and you can't do anything about the past. You can barely do anything about the present but you can create possibilities for the future and I think that's really what you guys are all doing in this situation is you're creating what does the future look like by going through what you're doing and everything like that. What was your emotions coming into the first meeting with Libby and with the other women in the group?

Michelle: I'm a pretty laid back person to begin with, so once I kind of got my head around it, it took me a good couple weeks though. I mean, not going to lie. I mean, I did some crying and a lot of hugging the family and a lot of, you know, all went through all of those emotions. So by the time I went to the first meeting, I think I'd gotten control of my emotions in that sense and just tried to be as positive as possible. I literally had to have a conversation with my husband about don't sweat the small stuff. I mean, if the garbage didn't get out, don't yell at the kids about it. You know what I mean? It's not that big of a deal. Things aren't that big of a deal anymore to me.

My priorities changed completely about what was important to me and what isn't important anymore so but yeah, I still get teared up about it. It's still hard to talk about because I'm still so much going through it. Yeah. But, these guys have been there for every question I've ever had, so it's so amazing. I mean, we're talking from the diagnosis to the staging of what that means and to hair loss. Yeah. Though the hair loss, that was a big deal for me. Yeah, that was a big deal for me. Um, but your wig looks so cute. It's a, this is, Libby gave me this wig, so, yeah.

Libby: Dr. Basha never knew what I was going to look like when I would show up. I had a different wig on.

Host: Oh, Every time

Libby: That's

Host: Both you and Julie

Libby: Both you and Julie too. Yeah. Julie too. Yeah. Yeah. Julie, too.

Well, that brings me to another, I forgot. We need to talk about our men's support group. We don't really, it's not official, but our husbands. They knew my husband, Julie's husband knew that it was hard. I mean, they talked to each other because they knew each other and texted a lot. But then as we had new people join us, they reached out. I know your husband was one that they hopefully helped with their conversations. Because it's hard on the support givers and the caregivers. It is.

Host: Do. It's a natural instinct.

Libby: Yeah. Yeah.

Host: What emotions run through you when a new patient comes in with a new diagnosis?

Sheri: Well, you know what, to be honest with you, you have a few minutes where you are, brought right back to your stage. So on one hand you're like, those emotions are all rising to the surface again. But then in the next breath, it's almost like okay I made it through that like so then you feel bad for the person. Because you know exactly what they're feeling and, what they're going through. Especially if you're dealing with a lot of symptoms, it can be very difficult. So, yeah, you're kind of just in that moment, in that one meeting, you could be emotionally all over but at the end of the day though, it's still very nice to be there together and to share. And when you walk away that night you feel empowered and you feel good. And I always felt, even for me going through it when I was in the thick of it, I always felt better leaving that night, because you didn't feel alone.

You knew you had people who were going through it yeah at the same time, going through the same thing. So, yeah, I remember one time it made me feel good because we were talking about wigs and I remember sitting there, I was kind of tearing up because I was ashamed of myself because I thought, and I told, Libby and Julie actually.

How can you guys have all these wigs and have so much fun? Because I thought that was going to be me. And I put the wig on and I'm like, at work and I'm itching the thing and I couldn't do it. So like after two months I ditched it and went for a hat. But they were nice enough to explain that I was wearing mine for like 10 hours a day.

And they're like, we don't wear them for that long. And I'm like, oh, okay. So give yourself a little grace. Because I was like, what is my problem toughen up sister.

So yeah, just even learning stuff like that, like, okay, well then I don't have to beat myself up. Does that make sense then? I still ditched it and went for the hats, but I just couldn't take it anymore.

Libby: I did feel we brought in a lot of people who had had breast cancer five, 10 years ago because we were just going through it. So we needed that experience and that knowledge. And there are some people who don't want to talk about it. They just are like you said, they're, yeah, it's in the past. I don't want to bring it up. It makes me feel bad or whatever. But I know like at this last meeting there was this woman who just was diagnosed, was just going to have her surgery, and Sheri was the only other person at that meeting who could answer some of her questions because of specific things.

So I was so appreciative that she was there and I just am appreciative of all the ladies who come and who have been through it so they can help those who are just going through it.

Host: Michelle, if a new person came to you with a new diagnosis, what would you share with them?

Michelle: I would tell them to call Libby because she knows about everything. Yeah. But she is so knowledgeable about all the different kinds of breast cancer and when I was first diagnosed, I thought there's only one. I didn't know that there was triple negative and HR positive and all I mean, so many different, and even though we're both triple negative, we're still very different, it's crazy.

But yeah, I would, definitely invite them to our group. And I, would answer whatever questions I possibly could answer, but even to this day, I still have questions. So, you know, I meet with my radiologist in a few weeks and I meet with my surgeon in a few more weeks. And, so, and I have pages of questions for them as far as, what my treatment looks like and because right now I'm just not, just don't know.

Host: Do you have that big bag that everybody else does?

Michelle: I do. I do. I have books. I have coloring books that I've never even used.

Libby: Well, I have to tell you the story because one of her best friends works at the school where I sub and she came to me and she goes, okay, we want to do something for Michelle. What can we do? And I said, you gotta get her a bag. Because know, that's my thing. That's Julie's thing. So it became my thing.

Michelle: Oh yeah. I have a big bag. We call it my cancer bag.

Host: Mm-hmm. I know the bag well.

Michelle: It goes with me everywhere. You know, it's got room for water bottles, it's got room for food.

Host: Beyond just funny. I think it's also a good tool in and of itself in getting through this journey because it gives something formal, and that reminds you that you're part of this bigger group for one. Yeah, I mean even though I always found it amusing when you and Julie would come in with those bags, it was also, yeah, yeah this is something that works. Do you have one, Sheri?

Sheri: I do have a bag.

Host: Okay.

Sheri: Yes.

Host: Okay, good. Again, I love the idea of forgiveness. I, really can relate to that. Like I said in my community that I did, one of the things, the way we talked about it was actually whatever happened in the past, you create stories around it and getting yourself outta the story by creating new possibilities and I think that's what you guys have done. That's my thing. Actually, that's how this podcast came about actually. It was one of my projects for that particular program that I was in and we had to come up with a program. And so one of my things was create this podcast. So we all need a tool to kind of get ourselves through that. I just have a couple more things and one is if you guys could just chime in however you want to in terms of how do you see yourselves as a community together, just in terms of how you feel personally as a part of this community as well as creating this community? What's that experience for you?

Libby: I love information, as you know and I want to get as much information from as many people as I can. And I'm a people person, so I like to be around people. I get energized from people. So I find that I need to be around people. And when I was diagnosed with my cancer, I talked about it all the time, and it was like, some people don't want to talk about it at all. Everybody's different. So it's hard to find when a new person comes into the group. We have to gauge like, okay, are they a talker about it or are they going to just kind of sit back and listen or whatever but I'm a talker, I guess in my community.

Host: Michelle.

Michelle: I am definitely one of the newest to the community as far as our group goes. But I also like to seek knowledge, and I know Libby and Julie have both done so much research that it was easy to go to them to answer a lot of the questions that I had.

Because you could open a book or you can go on WebMD or you can go online and you can try and answer your questions, but you just end up having more questions that way because your symptoms could fall into so many different categories. But, guess I'm a talker too. I'm a pretty much a people person.

So, I mean, I'm there to help anyone that has any questions. I'll help them with whatever I can and

Host: Same question to you, Sheri.

Sheri: I am a talker too and a people person, but I'm probably not the only one, but I, I think there's only two of us that had a double mastectomy and did not have the reconstruction.

 And so sometimes that helps because some people they, if somebody new came in, like we did have last time, we met with someone who was not going to have the reconstruction and then she did have quite a few questions and was like Libby had pointed out the only one.

Now I know my decision is not common, so I don't think it's going to be a lot of people coming, but if they did, and if somebody, you know, if I could contribute in that way.

Host: And contributing helps.

Sheri: Yeah. Well, it normalizes it because I was very ignorant when I first was diagnosed. Because I thought, okay, I'm going to get control of this and you know what? I gotta go to work. I'm going to go buy groceries. I'm going to stop and get my chemo treatment. I'm going to go home and do laundry. It was just like, just adding it to your to-do list, no big deal. Like, I got this and that's a hundred percent wrong.

Host: Yeah.

Sheri: So 100% wrong. I really thought I was going to get through with no symptoms. So I was healthy before this. I literally took no medication. So it was quite the shock to be able to be on this side of it now and to help people that might go through it, but also they're still helping me. Like these ladies are still to this day, because it is in the back of your mind. Like you don't want it to come back.

And am I eating healthy? Oh, no, I'm not today. You know, I better get back on track tomorrow or, because I want to do my part. So it's a constant reminder to try to live your life the best way you can.

Host: So actually I think I actually have two more questions. So I'll, the first one is, if somebody new with breast cancer was interested, one are you taking new people in, it sounds like you are. And how would they get about doing it?

Libby: Yes. So we meet every month. We meet on the second Thursday of each month at 7:00 PM at Trinity Church in Ashcom, Illinois. So we are always accepting new people and we have information at Riverside's, we need to get them to the other ones too, to St. Mary's. And, but our information cards are there, so if anyone even wants to ask and it has a little bit more information on there.

Host: I find it really amazing how you guys got together and created this for yourselves as well as your spouses and other people caring for you, the caregivers. What advice would you have for somebody with a different cancer on how you get things like this started?

Libby: Well, we just did it, so I don't know. I just do it. I guess I. We had two of us who were going through it, so it was kind of a little easier. That helped. But just, do it.

Host: So I gotta find my talkers in the other cancers.

Libby: Yes. Find talker and then have them do it. Yeah.

Host: Thank you so much. All of you, Sheri, Michelle, Libby, and to everybody in your group and your spouses for being a part of community, Creating Community.

And thank you to everybody listening to this podcast, the C word Community, not Cancer. please join us again for our next podcast.